Healthy Choices

Going on the offense with early breast cancer testing

The Kings’ game Thursday, Oct. 8, 2015, will have a “Pink in the Paint” theme, devoted to breast cancer awareness.
The Kings’ game Thursday, Oct. 8, 2015, will have a “Pink in the Paint” theme, devoted to breast cancer awareness. NBAE/Getty Images

It’s the breast-cancer gene that actress Angelina Jolie made famous.

A mutation in the gene, known as BRCA, in women – and men – greatly elevates the risk of developing breast cancer.

Now in an unusual partnership, the Sacramento Kings and 17 Bay Area companies have teamed up with a Silicon Valley startup, Color Genomics, that is drastically dropping the cost of testing for BRCA gene mutations. The companies have all pledged to offer the testing at low or no cost to their employees.

And Thursday night, the Kings are bringing BRCA testing to fans at Sleep Train Arena during their preseason home opener, dubbed “Pink in the Paint” in honor of National Breast Cancer Awareness Month. In doing so, the Kings are part of high-tech efforts to make medical testing more affordable and accessible.

For years, genetic testing to find the BRCA gene mutation was costly – as much as $4,000 or more – and often not covered by insurance. That changed in 2013, when the U.S. Supreme Court unlocked the long-standing patent on BRCA testing held by Myriad Genetics of Salt Lake City, opening the way for competitors. Today, companies like Ambry Genetics in Southern California and Invitae in San Francisco handle testing for hospitals. Color Genomics, a Burlingame company backed by a number of high-tech luminaries and launched in April, says it has used software efficiencies and lower overhead to bring down the cost to $250 or less.

“Our goal is to democratize access to testing,” said company co-founder Othman Laraki, a longtime tech investor and entrepreneur who worked in product development for Google and Twitter. He said Color Genomics spent nearly three years developing its testing lab, reducing the cost partly by streamlining the testing process and eliminating insurance company involvement. He said the company’s testing results were vetted by genetic medicine experts at UC San Francisco and the University of Washington, which are nationally known in the field.

As for selling the test to fans at an NBA game, the approach draws cautionary advice from veteran genetic counselors.

“It’s in everyone’s best interest that, prior to testing, individuals be informed of the implications of receiving a positive, negative or inconclusive test result,” said Donna Walgenbach, a UC Davis genetic counselor for 27 years. “They need to know what these results mean for them, their family members and their health. To blindly go into testing if an individual hasn’t had a thoughtful consideration of these implications may not be in their best interest.”

For Laraki, the testing issue is personal: His grandmother died of breast cancer and his mother has successfully trounced breast cancer twice, at age 29 and 54. After her second diagnosis, Laraki said, he and his mom were tested and both are BRCA positive.

Asked why the company landed a Sacramento team and not the San Francisco Giants, Oakland A’s or another Bay Area franchise, Laraki pointed to a tech community connection to Kings team co-owner Vivek Ranadive, the founder and former CEO of Silicon Valley software company Tibco.

“Sports has a very unique tie to awareness of breast cancer,” said Laraki, noting that NBA, NFL and other major-league sports teams annually participate in breast cancer awareness events.

The Kings are offering free BRCA testing to all of the team’s 93 women employees. Of the other 17 companies who signed on, some are offering it to employees at discounted rates; some are including spouses and male employees, who can carry the BRCA gene as well.

“Part of our NBA 3.0 philosophy is to use basketball as an agent of social good. By providing cutting-edge tools like genetic testing, our team members can keep their health a priority,” said Matina Kolokotronis, Kings president of business operations, in an email. “If one team member, fan or guest is educated about their potential health risks, it’s worth it.”

At Thursday’s game, sponsored by Kaiser Permanente, players will be sporting pink shoes, socks and headbands to highlight breast cancer awareness, while coaches will don pink ties and lapel pins. Fans can write the names of friends and family members affected by breast cancer on pink signs to be waved from the stands. Breast cancer survivors will be honored at halftime.

On the concourse, Color Genomics staffers will sell BRCA testing kits for $175. The tests, which require sending a saliva sample to the company’s Bay Area lab for analysis, also screen for 17 other genes related to breast and ovarian cancers.

They require a doctor’s order to complete, either through the individual’s personal physician or a company-approved doctor. Once testing is complete, the company said it offers free counseling where individuals can discuss the results with a board-certified genetics counselor. The Color Genomics test sells on its website for $250.

Is testing for everyone?

Not everyone needs to be tested. Typically, BRCA1 and BRCA2 testing are recommended for those with a cancer diagnosis or a strong family history of cancer, on either their father or mother’s side.

Other genetic mutations can lead to hereditary cancer, but they’re rarer and typically indicate a lower likelihood of developing cancer. Those who are BRCA1 or BRCA2 positive have an estimated 50 percent to 65 percent likelihood of developing breast or ovarian cancer in their lifetime, but some studies have pegged the risk far higher.

“It’s a really big deal. Having a BRCA1 or 2 gene dramatically increases the risk of cancer. It’s important to identify these cases,” said Kaiser Permanente medical geneticist Mark Lipson.

While it’s inevitable that the cost of testing will decline, Lipson said, he emphasized that interpreting the results of genetic testing requires trained specialists.

He and other experts say a patient needs a good understanding of what the test results will mean.

“If someone tests positive, you want them to understand what it is they would be offered in terms of medical management: prevention, increased surveillance, risk reduction,” said UC Davis’ Walgenbach. That could include steps such as an annual breast MRI (in addition to a mammogram) or more radical measures such as undergoing a preventive double-mastectomy to remove both breasts, as actress Jolie did in 2013 and publicly shared in a New York Times op-ed essay.

That’s the same step taken by Karen Koenig, a special education teacher in Turlock, after getting her BRCA results from UC Davis in January. Koenig, whose mother, two aunts and grandmother all died from breast cancer, said she didn’t hesitate after discovering she was BRCA2 positive. In April, she had a double-mastectomy, along with having her ovaries and fallopian tubes removed. Her sister, in Minnesota, did the same about a month later.

It was instant relief. “My whole life, this has been overshadowing me,” said Koenig, who was 12 when her mother died of the disease. At every yearly mammogram, she worried about getting the “dreaded diagnosis” that had hit so many of her family members. Now, she said, “I kicked cancer’s butt before it kicked mine. It’s a new beginning.”

Not everyone who gets tested positive for BRCA1 or 2 will get cancer, noted Kaiser medical geneticist Lipson. But interest in testing has remained high since Jolie went public with her personal story two years ago. “The whole field exploded,” he said, noting that Kaiser’s referrals doubled, as did the number of patients tested.

For those with family histories such as Koenig, getting tested is a no-brainer.

“Hats off to the Kings,” Koenig said after hearing about the team’s participation. “Even if one woman gets tested, that’s a positive outcome. The test is a gift.”

Editor’s Note: This story was changed Oct. 7 to correct the list of universities that helped test Color Genomics’ results. The University of Pennsylvania is a partner with the company but not in the testing process.

Claudia Buck: 916-321-1968, @Claudia_Buck

What is BRCA

What it is: BRCA officially stands for “BReast CAncer susceptibility gene,” commonly referred to as BRCA1 and BRCA2 genes. Inheriting a BRCA1 or BRCA2 genetic mutation from a parent means a greatly increased risk of developing breast and ovarian cancer, as well as some other cancer types. Testing is done using a blood or saliva sample.

Costs: The cost varies, but typically runs about $3,500-$4,000 through a medical provider. Insurance company coverage is not guaranteed, but depends on meeting certain criteria, such as family history of cancer.

Recommended: Those with a family history of cancer, especially cancers diagnosed before age 50, are generally recommended for BRCA testing. Certain ethnicities, such as Ashkenazi Jews and those from Iceland, Norway and the Netherlands, are more likely to have BRCA mutations.

Cancer risks: Generally, about 12 percent of all women will develop breast cancer in their lifetime. For those with a BRCA1 mutation, it’s estimated about 55 percent to 65 percent will develop breast cancer by age 70; some studies put the risk at 80 percent. The breast cancer risk for BRCA2 is slightly less. With ovarian cancer, about 1.3 percent of women will be diagnosed in their lifetime; that estimate jumps to 39 percent of women with BRCA1 mutations. (Rates are slightly lower for BRCA2.) Men with BRCA mutations also are at a higher risk of developing breast or prostate cancer.

Upside of testing: Those who test positive can take preventive measures, such as increased cancer surveillance or preventive measures, such as a mastectomy. Even with a positive BRCA1 or BRCA2 test result, not all men or women will develop cancer.

Downsides of testing: Knowledge of test results without proper guidance from medical professionals may affect a person’s emotions, social relationships, finances and medical choices.

Source: National Cancer Institute, www.cancer.gov

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